Sunday, July 31, 2011

Last week, we took Alex to our local county fair, one of the annual traditions he looks forward to doing every summer. As always, we took him through the livestock barns to see the pigs, cows, sheep, goats, rabbits, and his favorite, the horses. Although he’s not terribly interested in the animals themselves, he does enjoy reading the information cards on each animal’s pen telling data such as its birthdate or weight since he categorizes everything numerically. One of his favorite exhibits features young farm animals, but the real draw for Alex is that each animal pen has a quiz question about that animal, such as, “How many stomach parts does a cow have?” This year, he got every single question on this interactive quiz correct. I’m not certain if he just memorized the answers from previous years, or maybe he actually learned something about the animals from these exhibits.

Besides the animals, we visited the antique tractor tent, where my dad, who grew up on a farm when he was a boy, told more information about these old tractors than the signs that just noted their brand and year of manufacture. Of course, Alex was most interested in the dates on the signs and probably didn’t really care that Grandpa’s dad used a 1930’s Farmall tractor when Grandpa was growing up on the farm. On the other hand, we’re never sure what Alex is absorbing mentally when he has the bemused smile upon his face.

After we checked out the animals and farm equipment, we headed over to the midway to see the rides and games. Because we’re uncertain how Alex would react to the carnival rides, due to his sensory issues, he just watches other people and seems to prefer being an observer, rather than a participant. However, he does like to play the duck pond game, where he chooses three rubber ducks from the water and is guaranteed to win a prize. The woman who ran the duck pond booth this year was especially kind to Alex, patiently showing him his options for prizes and waiting until he was ready to choose from three different stuffed animals. This year, he chose a blue stuffed snake, which he carried around at the fair and has continued to carry around the house since then.

With the hot weather, I was pleased to find a misting station in the midway, where people could stand and be sprayed by a cool water mist. Alex wasn’t as eager to try this cool treat, but he finally tried standing under the refreshing spray. Before we left the fair, we decided to get cold drinks and relax at a picnic table under the shade of a tent. I told Ed to get large drinks, not knowing that the large cups were 32 ounces. Alex must have been thirsty because he downed his 32-ounce Sierra Mist rapidly and then drank about half of Ed’s Pepsi. As we watched Alex enjoy his time at the fair, Ed and I remarked about how he’s changed over the years. When he was little, we wheeled him in the stroller, then for several years we both held onto him tightly as though he were a fugitive about to escape, later we took him in a transport chair so that we could easily wheel him through the crowds, and now he walks with us, a young man confident about where he’s going. The only thing he didn’t seem to like was having his picture taken. Maybe he really is a typical teenager after all, and our trying to capture those “Kodak moments” embarrasses him. We were pleased by how well he handled himself despite the noise, crowds, and various smells, but we were most pleased that he really enjoyed himself during this annual trip to the fair.

“God made all sorts of wild animals, livestock, and small animals, each able to produce offspring of the same kind. And God saw that it was good.” Genesis 1:25

Wednesday, July 27, 2011

I am not a traveler. As my sister and her family headed off this week for a summer vacation in Myrtle Beach, I was happy for them but even happier that I didn’t have to go anywhere this summer. My aversion to car trips, I’m sure, was shaped by our annual summer treks to see my mom’s family in West Virginia. While I was delighted to get there and visit my relatives, the journey there was not fun. Of course, this was in the 1970’s when kids didn’t have personal DVD players, handheld video games, IPods, or cell phones to keep us amused during a nine-hour trip. Nope, I had a book and a stack of Tiger Beat magazines to pass the time. My parents and we three kids would pile into our version of the Griswold family truckster [from the movie Vacation], a Buick Estate Wagon, and make the trip southeast. My mom would pack a nice assortment of snacks for the trip, including cheese and peanut butter crackers that left orange powder on our hands, seats, and car mats. One year, the three of us plowed through a box of Bugles corn chips less than a half hour into our journey, leading my mom to complain and later be quoted through the years, “You ate all the Bugles, and we’re not even to Wheatfield!” [a real town in Northwest Indiana about 30 miles from our hometown] My dad did all the driving and insisted on complete quiet, which meant that any territorial disputes within the car between siblings had to be settled through dirty looks so as not to disturb our driver and risk his wrath. Moreover, he saw no need to stop unless we needed gasoline, so we learned to ask for bathroom breaks only when absolutely necessary. I don’t think he intended to be a tyrant about things; he just focused on getting there and making good time instead of making the getting there a good time.

After Ed and I were married and went on some car trips of our own, I began to experience some déjà vu, minus the family station wagon and sharing salty snacks with my siblings. Like my dad, Ed preferred to travel in silence, although we could listen to music at times, and he also stopped infrequently for rest or bathroom breaks because he, unlike me, rarely needed to stop and rest or use the facilities. To pass time, I would read books or People magazines, but I discovered the best way to pass time (and not think about having to use the bathroom) was to sleep. Ed even wrote a poem [“Driving North at Nightfall”] that mentions my penchant for dozing in the car while he notices the landscape along the way. Anyway, my lack of affection for traveling has made it easy to accept that we can’t vacation with Alex; this has not been a sacrifice for me. Since Alex is on a restricted diet due to his food sensitivities, planning what he can eat away from home would be a tricky task. Also, his previous history of meltdowns in the car makes us reluctant to take him on a long car ride, lest risking being hit, kicked, or pelted by objects thrown by our backseat driver, should something along the way annoy him. Moreover, Ed and I always have various escape routes and diversion plans for known places that may not necessarily work for strange places, so we’re not eager to put ourselves in situations that could be potentially dangerous, or at least embarrassing, should Alex pitch a fit. And so, this summer, I look over the vacation pictures my friends have shared on Facebook and don’t feel a twinge of jealousy, pleased that Alex’s unpredictable behavior has allowed me to sleep in my own bed, use my own clean bathroom, and avoid being cooped up in the car wondering when we can stop and get out.

Knowing that summer vacation should be a time of new adventures, however, Ed and I have worked at trying to give Alex opportunities to do fun things during our autism-imposed “staycation.” When he was younger, Alex liked to wander around the backyard and play in the sprinkler, but he’s outgrown those activities, leaving us to find things to do close to home. We’re big on free or cheap entertainment in case we have to leave quickly with Alex, so as not to compound the frustration of changed plans with wasted money. This summer, we have taken Alex to “Wonderful Wednesdays,” the weekly noon free concerts at the Valparaiso University Union, which have been terrific. We’re on familiar territory there, and Alex enjoys listening to the singer-guitarists while we sit and sip soft drinks. In addition, we’ve taken him to Dairy Queen for slushes, a local coffee shop for root beer, and family restaurants regularly for meals. He also likes going to our local arcade to play their Deal or No Deal video game. One of our daily activities is shared computer time in which, thanks to our wireless router and each of us having our own laptops, we are all on our computers at the same time. Ed checks out literary journals, current events, and political websites; I play video games, read entertainment news, and spend time on Facebook; and Alex does math research, checks out electronic gadgets, and Googles a variety of topics he wants to learn. For something new, Ed bought Alex an inexpensive digital camera and has taken him to our city parks to take pictures, which he seems to like doing. Alex’s favorite pastime, however, is grocery shopping at Walmart, where he likes strolling the aisles, pushing the cart, and smiling in amusement the entire time. For him, this is Disney World. While I guess we should be thankful that he finds fun in such a common activity, we still keep looking for summer recreation to keep him interested and busy. Besides, I’m hoping to do something worthy of good photographs to post on my Facebook page and/or material to write for the blog. With four weeks of summer vacation left, I’m sure we’ll find it soon.

“So I recommend having fun, because there is nothing better for people in this world than to eat, drink, and enjoy life. This way they will experience some happiness along with all the hard work God gives them under the sun.” Ecclesiastes 8:15

Sunday, July 24, 2011

A few days ago Parents magazine posted an article on its website called “7 Things Not to Say to Parents of Kids with Special Needs.” This feature came from Ellen Seidman’s blog To the Max, where she writes about raising her son who has cerebral palsy. While she clearly states in this article her frustration with people who say awkward things to her about her child, I can summarize her suggestions into three basic areas. [Her article can be accessed by clicking HERE.] First, she does not want pity for her child or herself, and I can relate to her feelings on that matter. However, I think people sometimes confuse pity and sympathy, and others aren’t certain what to say to show that they care about the parent who is dealing with a special needs child. Another comment she thinks is improper is asking about what skills a child has mastered, for example, whether the child is walking yet. Again, I suspect that people are trying to express interest but don’t know how to show this in ways other than by making remarks that may be construed as judgmental or just plain nosy. Then in the next three items, she gives examples of remarks that focus upon the child’s appearance when people say that the child looks “cute,” “normal,” or happy. While she views these comments as negative, I value that someone is trying to find the positives in the situation and be complimentary, albeit in perhaps a less than articulate way. Finally, she lists the following remark as taboo: “You are a saint.” She asserts that she is just like any other mom, trying to help her child. The thing is, parents of special needs children do have different challenges than other parents, although not worthy of sainthood, but certainly buoyed by compliments that recognize the job we are doing in raising our children. When people have said kind things to me about my parenting, I appreciate their comments, which give me support and encouragement. Although I admire Ms. Seidman for expressing her feelings candidly about comments she finds hurtful, I realize that I see things slightly differently as a special needs parent than she does, maybe because I’ve been in this game of Chutes and Ladders longer than she has.

Even though I tend to be overly sensitive to people’s remarks, even to the point of being somewhat paranoid and assuming that people don’t like me unless they openly declare admiration and affection, I guess I try to assume that people have good intentions. Because I have been blessed with people who have shown thoughtfulness and concern for how autism has impacted us, I would take a different approach and suggest things to say that would be positive and reflect the support they are trying to show. My list of “What to Say to Parents of Kids with Special Needs” would include the following:

1. Focus on the positive with a genuine compliment for the child, such as, “He has a great smile.” or “He is so smart.” or “He’s really a great kid.” All of these examples were said to us about Alex, and as a mom, they filled me with pride.

2. Ask about the child’s interests and activities, just the way you would about any person you wanted to know better. For example, the questions “What is he interested in lately?” and“ What does he like to do?” treat the child as typical and allow the questioner to know more about the child’s personality.

3. Express support for the parents by commenting on their strengths. Parenting is often a thankless job, and parenting a special needs child adds extra responsibilities to that load. Comments like “You are wonderful with him.” and “You’re doing a great job.” lift parents’ spirits. I appreciate kind words and have been blessed by great friends and family who reassure me often. In other words, if you have something nice to say, I encourage you to say it.

This article regarding what not to say came as I have been mulling Alex’s schooling lately. This past week Ed and I have been in situations where we were asked questions about Alex and whether he was going to college now that he’s 19. When Ed was buying an anniversary card for me a couple of weeks ago, the clerk asked him how long we’d been married, how many kids we had, and how old they were. Even though his native New Yorker personality makes him bristle at personal questions from strangers, he’s been in the Midwest long enough to be nice about answering them anyway. He told the clerk we’ve been married 23 years and have a 19-year-old son. The clerk then asked where our son was going to college, and Ed told her that he’s not going to college, to which she replied, “Oh, he probably will eventually,” not knowing Alex has autism. Similarly, I saw an old friend who moved away several years ago but was back in town for a visit with family last week. Although she knows Alex has autism, she asked if he is going to college, commenting on how smart he is, and I told her no. In both of these situations, people were trying to be nice, so neither Ed nor I were offended by their questions but appreciated their interest. In contrast, I found numerous comments in response to the Parents online article reflected a needless hostility. Parents of special needs children resented questions and remarks from people who didn’t understand, and people who did not have special needs children accused the parents of being overly sensitive. What was intended to bring people together created a rift, which is sad. However, I do believe that most people are good at heart, and while people need to choose their words carefully, we also need to listen carefully to the true meaning behind those words. In talking about any child—special needs or not—I hope people focus upon the good, making their remarks truly remarkable.

“Some people make cutting remarks, but the words of the wise bring healing.” Proverbs 12:18

Wednesday, July 20, 2011

The other day, Ed came up with the perfect analogy for our life with Alex and autism. He commented that he’d finally figured out that the ups and downs in Alex’s progress reminded him of the board game Chutes and Ladders. Explaining further, he said that last summer, Alex was making good progress in his development, figuratively climbing the ladders of the game, but recently he seems to have slid down one of the chutes, going backward instead of forward. As I’ve mentioned in previous blog entries, Alex seems to be dealing with allergy issues this summer that have made him listless and irritable at times. Under medical supervision, we have adjusted his nutritional supplements and have been treating him with a quercetin supplement to relieve his allergy symptoms along with vitamin C to detoxify his system. While he has gradually improved in his mood and become more his energetic usual self, he still refuses to talk unless he is mad about something. He will interact with Ed and me through eye contact and following our verbal instructions, but he doesn’t say much. This step backward has been very frustrating for us because we can’t figure out why he’s not talking, and he certainly won’t tell us why.

After Ed mentioned the game, I went down to the basement to find Alex’s Chutes and Ladders game board, perhaps as a nostalgic quest. Because the game involved numbers and dice, this was a particular favorite of Alex’s, and moving the game token was a good fine motor exercise for him. At some point, he became bored with the simplicity of the game and moved on to more strategic games, such as Monopoly. In our basement closet that stores games, I discovered the old Chutes and Ladders board, but in opening it to the actual game, I uncovered a piece of Alex’s past I had forgotten. On the Chutes and Ladders game board, cartoon children are depicted engaged in good or bad activities, which determines their consequences and leads them to chutes or ladders. Specifically, if the child pictured does something bad, the player gets sent down a chute, moving the progress on the board back several spaces. However, if a cartoon child is shown doing something good, the player is rewarded for that behavior by being able to move ahead several spaces using a ladder that helps make progress go much faster. As I scanned the board, looking at the various pictures, I realized that the game teaches more than just numbers from 1-100; Chutes and Ladders intends to teach a moral lesson about life: if you do good things, you’ll get a reward, and if you do bad things, you’ll be punished.

Looking more closely at the board, I noticed that I had written comments beside each child’s picture. For example, a boy is shown handing a purse to a woman, and I had written, “GOOD-Returning purse to lady.” This positive behavior allows the player to climb a ladder, moving ahead from space 71 to 91, where the good child is pictured eating an ice cream sundae, and I had written, “GOOD-Gets ice cream.” I suppose that we are to infer that the woman gave the boy a monetary reward for his honesty in returning the purse that he used to buy ice cream, but I wonder how many little kids playing the game make that connection. In contrast, a boy who is pictured mistreating a cat receives the natural consequence of being scratched by that cat, and the game player must go down the chute from space 98 to 78. For these two squares, I had written, “BAD-Mean, teasing cat (pulling tail)” and “BAD-Cat scratched him.” In my simplistic written explanations, I was trying to help Alex learn the lessons each picture was trying to convey. As I thought more about these captions I’d written, I remembered that little Alex would point to each picture and ask, “Means?” This was his way in his limited speech of asking what was happening and requesting an explanation. He was trying to make sense of the world, and by writing the comments on the game board, I was trying to help him understand human interaction, albeit with a child’s simple game board. As we continue to “play” the real-life version of Chutes and Ladders, we pray that the chutes will be few as we keep searching for the ladders that move Alex ahead more quickly. In the meantime, we roll the dice and try to do good things as we strive for that elusive number 100 space with its ultimate reward, the blue ribbon—for Alex, overcoming all of autism’s obstacles.

“Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9

Sunday, July 17, 2011

Yesterday we celebrated our 23rd wedding anniversary, reminding me of what a blessing our strong marriage is, especially in light of the stresses autism can place upon parents. Last year, in my blog entry, "Complements," I explained how Ed and I balance one another and pull together to help Alex and each other, which explains the secret of our success as a married couple. A year later, our partnership stands even stronger with time and experience, and so I share once again "Complements."

Tomorrow Ed and I will celebrate our 22nd wedding anniversary. Along with our unconditional love for each other and Alex as well as our mutual respect, a key to the success of our marriage has been how well we balance and complement each other. While Ed is calm and take-charge, I am energetic and organized; these traits serve us well. For instance, we have an understanding about the division of tasks. If I call the plumber, Ed will explain the problem to him once he arrives. If I make the doctor’s appointment, Ed will go. In raising Alex, we have needed to pull together—sometimes as a couple and other times taking turns as individuals—to make the best life for our family.

Over the years, we have learned how to work cooperatively to help Alex. While I suspect that Ed sometimes wishes that there were a mute button for me, he patiently listens and offers his opinions when I share with him the autism research I have found. He has always trusted my judgment on medical options and various therapies, and he has consistently supported which paths I wanted to take to help Alex, even those that were somewhat unconventional. That faith in me has given me confidence to pursue a variety of interventions that have made Alex better. In addition, we have learned to work together with Alex to accommodate his needs, including sharing home schooling responsibilities. Sometimes we have had to make up stories to relieve Alex’s fears, each one contributing part of the fabrication, supporting the other, to convince Alex there was no reason to worry. Other times, we had to maneuver Alex physically to prevent his having a meltdown in public, a strange dance where we both knew the rhythms to move him deftly. Ed has jokingly said that the two of us could work for the Witness Protection Program because we could get Alex in and out of places without anyone noticing he was there—sometimes we were on either side of him and holding his hands, and other times one walked in front of Alex while the other walked behind him. By collaborating, we have kept Alex safe and content.

Fortunately, because of our job schedules, one or both of us have always been home with Alex. In fact, we were both home with him for the first eight months of his life because I was on maternity leave, and Ed was on sabbatical from teaching his college classes. Early on, we shared responsibility for Alex’s care, including feedings and diaper changes, adopting a schedule that worked well for us. Since Ed is a night owl, he would stay up late and give Alex his 2 A.M. bottle, and because I’m a morning person, I would get up to feed him at 5 A.M. Several years later, when we had to do round-the-clock chelation to eliminate the toxic metals in Alex’s system, we adopted a similar schedule. Ed gave Alex the midnight pill, we both got up to do the 3 A.M. dose, and I gave him his chelation medication at 6 A.M. I sometimes refer to our schedules during the school year as tag-team parenting because Ed is home with Alex in the mornings while I’m teaching, and then I’m home with Alex in the afternoons while Ed is teaching. On the evenings that Ed isn’t teaching classes, we’re both home, and we’re fortunate to have weekends and summers to spend together as a family. Sometimes tag-team parenting has taken on new meaning when Alex was going through challenging phases. When one of us needed a break from Alex’s demands, the other stepped up and took care of him. I am baffled how single parents—and there are many of them—raise children with autism alone. Whether providing support, allowing one parent to have free time, or working together to help the child, a strong marriage is a blessing for the parents as well as the child with autism. When the following passage was read at our wedding from I Corinthians 13:7, "Love never gives up, never loses faith, is always hopeful, and endures every circumstance,” I had no idea how prophetic those words truly are. Now I am grateful for the steadfastness, faith, hope, and endurance love has given us, strengthening our marriage as we raise the precious son God has given to us.

"Two people are better off than one, for they can help each other succeed." Ecclesiastes 4:9

Wednesday, July 13, 2011

This summer I have read two memoirs written by mothers of children with autism, which I always find interesting as I compare notes. Both of these books discussed the concept of “windows of opportunity,” the critical stages of brain development, and the race to have their children master skills by certain ages. This windows theory from the 1970’s has haunted parents of children with developmental delays who are frantically trying to help their children reach milestones before those windows close. I’m reminded of the scene from the movie Titanic where the workers in the bowels of the sinking ship must hurry before the doors to the watertight compartments closed tightly, trapping them from ever escaping. Like the workers helping each other as they scramble through the doors that seal their fate, parents push their children toward those developmental windows, not wanting them to be left behind their peers. Of course, this windows theory drives the need for early intervention, making certain that children with developmental delays, such as autism, get the help they need as soon as they are diagnosed.

Despite our best efforts and concerns, Alex wasn’t officially diagnosed with autism until shortly after he turned four years old. At that time, the prevailing thought was that the main window of child development closed at age five, giving us only about a year to push Alex as far as he could go. As if dealing with a child with autism weren’t stressful enough, the thought of having a rather brief time limit to “fix” him only added to the worries. His special education preschool teacher (the same one who made him hold a sign that said, “IGNORE ME!”) apparently bought into this windows theory because she would repeatedly express concerns about Alex’s thumb sucking and trouble with toilet training. Basically, she seemed to believe that if he didn’t master toileting and stop sucking his thumb by his fifth birthday, he would never break his thumb sucking habit, nor would he ever toilet independently. Since I had sucked my thumb until I was nearly six years old, I knew her beliefs were wrong. Nonetheless, my own reading and research about child development indicated that many people believed the windows theory to be true, and I felt pressure to help Alex develop as many skills as possible before that dreaded window was supposed to close at age five.

As a middle school teacher, I was taught in education classes that students cannot learn much during adolescence because hormonal changes affect their brains and distract them from learning new skills. Like the windows concept, this adolescent learning plateau hypothesis may be true in theory, but I have found both ideas to be false in practice. I know that my seventh graders learn new skills in the year that they spend with me, and I have the data to prove it. Similarly, children continue learning after that alleged window closes at age five; I have observed that Alex has gained a great deal of knowledge and skills after he turned five. Despite his preschool teacher’s dire predictions, he did stop sucking his thumb and started using the toilet on his own—in his own good time, when he was ready to master these tasks. Ironically, once Alex turned five and we got past that dreaded window that nagged me, even if I didn’t totally buy into the theory, I felt a rush of fresh air come into our lives. No longer racing against an arbitrary clock, we continued working with Alex and celebrated each milestone, knowing that learning is not something to be rushed, but rather to be enjoyed as a lifelong pursuit with each person mastering skills on his or her own timetable. Thankfully, we have found this to be true with Alex, who continues to learn and develop, long after his fifth birthday has past.

“So she helped him climb out through a window, and he fled and escaped.” I Samuel 19:12

Sunday, July 10, 2011

A couple of weeks ago, I described in my blog post “Farewell, Double!” how Alex seems to be recovering from the effects of allergies that have been bothering him lately. Thankfully, he has overcome the fatigue that was annoying him. In fact, he has returned to his old self with a couple of notable exceptions. First, his anxiety attacks have been popping up with less warning than usual. In the past, Ed and I knew Alex was agitated because we could foresee triggers and note behaviors that signaled he was upset. Lately, he seems to go “from zero to sixty” without any obvious provocation (e.g. the cable is out, his computer isn’t working, etc.), and he hasn’t been muttering (as I explained in the entry “Flow Chart”) to signal that his volcano is ready to erupt, allowing Ed and me to run figuratively to higher ground, or at least to put away any potential projectiles. These anxiety attacks, less predictable than usual, have kept us on our toes all summer, but fortunately, they have been less aggressive than those in the past. Most of the time, we have been able to console him through talking about his concerns, which brings up the second change we’ve noticed this summer.

Although Alex has always been rather reticent to talk, this summer he has definitely been a man of few words. One of the primary manifestations of autism in Alex has been his difficulty with expressive language. While his receptive language, or ability to understand what he hears and reads, is quite good, he has always had trouble generating speech and written words, despite years of speech therapy and our constant work with him. Along with his difficulty in trying to talk, Alex is intelligent and self-conscious, which makes him realize that he doesn’t speak as clearly as he would like. Through the years, Ed and I have tried to help him with this issue, alternately speaking for him when he’s out in public so that he won’t be embarrassed, or fighting the urge to finish his sentences for him when he’s at home and has no need to feel uncomfortable that he can’t always find the words he wants to say. Over the years, through time and practice, Alex’s speech has improved so that he can express himself through brief statements, and he has developed a surprisingly strong vocabulary, probably from his extensive reading and from conversing with his two English teacher parents. This summer, though, Alex has reverted to not volunteering information verbally and pretty much confining his answers to responses of “Yes” or “No.” In fact, sometimes, he doesn’t even answer those questions and will respond with gestures or facial expressions instead to indicate what he wants to convey. Needless to say, this regression of language skills has been worrisome and frustrating to Ed and me because it feels as though Alex has built a wall between himself and the rest of the world by refusing—and I do believe this is a conscious choice on his part—to talk. Moreover, as I reminded him the other day, we spent a great deal of time and money on speech therapy, which we’re not putting to good use when he won’t speak.

An added twist in Alex’s recent silence lies in his sudden bursts of eloquence during anxiety attacks. When Alex is agitated, he expresses himself quite clearly verbally, letting us know what the source of his anger/frustration/concern is. He uses precise adverbs such as, “approximately,” “actually,” and “exactly” to tell us about incidents from the past he remembers that bother him. While most of his complaints have to do with never wanting to use his typewriter, graphing calculator, or the computer game Monopoly Junior (all of which were previous obsessive activities he engaged in when he was younger), he also discusses abstract concepts, such as the passing of time and infinity. Despite his difficulties in using first and second person pronouns correctly, when Alex is in ranting mode, he never refers to himself as “you” or “Alex,” as he often does; instead he correctly uses “I” and “me” to express his feelings. While he usually speaks in words, phrases, or short sentences, during these verbal meltdowns, Alex seems to construct longer compound and complex sentences effortlessly. For example, the other day he expressed his frustration by telling us, “When I was 14 and 15 years old, it seemed like 30 years.” Ed and I questioned him a little further to see what was behind his mathematical analysis, and he explained, “Those years were boring; each one was like seven years.” I guess he was trying to deal with the idea of how time seems to drag when life isn’t interesting. Ed, who is more mathematical than I am, figured out that by adding Alex’s proposed seven years of boredom together, he came up with 14 years and then added that to age 16, which was apparently a less boring year in Alex’s eyes, which gave a total of 30. Ed ran this theory past Alex, who confirmed that was exactly what he meant by his cryptic comment. Another interesting observation I’ve noted during these word oases in the middle of Alex’s word desert is that Alex’s eye contact is significantly improved when he’s talking with us. Not only will he look at Ed and me when he’s telling us his worries, but he will also look us right in the eyes when we talk with him. These odd conversations ironically mark the most interactive and social behavior Alex has ever shown. As Alex talks with us during these times, we watch his anxiety gradually fade; by expressing his concerns and knowing that we care, Alex can address these fears head-on and regain his composure. While we miss the everyday conversations about the weather and game shows and what foods he likes to eat, I have hope that Alex will soon regain his desire to talk with us more often and suspect that his verbal outbursts indicate a progress in his development. We’ll just look forward to conversations that begin in delight instead of aggravation so that we can learn more about how Alex thinks because I suspect there’s a lot more on his mind that he has to share with us.

Wednesday, July 6, 2011

When I was growing up, my mom frequently bought copies of the magazines Family Circle and Woman’s Day at the grocery store. An avid magazine reader, I would pore over the articles, tips, and recipes in these colorful magazines, but I also remember enjoying a feature in Woman’s Day called “Lifesavors.” A quick Google search this week informed me that Kathryn Swarthout wrote this feature, which she describes on her website as “free-form poetry,” for more than twenty years. As I recall, her writing consisted of lists of common, yet often overlooked, pleasures in life described in vivid imagery, such as an ice cold glass of lemonade on a hot summer day or the sound of ocean waves crashing against the shoreline. Life with autism has taught me to appreciate and savor the simple joys in life that often catch me by surprise.

For me, life savors would include sounds and sights I associate with Alex, such as the following:

the rush of water as Alex flushes the toilet, a reminder of relief that he finally learned how to use the bathroom independently;

the melody of Alex’s laughter at something that he finds genuinely amusing, especially when he and Ed are sharing a joke;

watching Alex sway, uninhibited, when he hears music he loves, whether it be jazz, country, or some nondescript instrumental tune played on our cable weather channel; or

seeing the light in Alex’s dark eyes when he’s enjoying doing something, often accompanied by a smile that spreads across his face.

For Alex, some of the things he savors in life include the following activities:

going to the local arcade to play Deal or No Deal, always choosing "No Deal" to make the game last as long as possible;

finding a comfortable spot to read one of his beloved books;

spending time along the beach at the Indiana Dunes, writing in the sand;

playing basketball with Daddy at the playground;

or taking photographs of flowers in the park with Daddy.

Although autism has made our family life untypical, we have learned to savor those things that are typical, the everyday joys which take us by surprise and make us realize that often simple and spontaneous have more to offer than complex and planned. These moments of contentment bring Alex happiness, which blesses us and makes us happy, as well.

Sunday, July 3, 2011

The other day I was working on one of my dreaded summer tasks—organizing our basement storage room. When we put away the Christmas decorations in that room six months ago, I remember thinking that we really needed to straighten up all the clutter that seems to accumulate in there, so easily forgotten by its location and the door that closes it away from the rest of the house. After watching a recent episode of Clean House, in which professionals help people organize their messy houses (some of which resemble those on Hoarders), I realized that I needed to attack that room with a vengeance, sorting the contents into three categories: keep, give away, or throw away. Motivated by a stormy day that prevented doing anything more fun or more productive, I headed to the basement ready to confront the job ahead. Moreover, I knew I had a deadline because our city offers clean-out days after major holidays in which they permit people to set out more garbage than fits in the designated trash containers without charging a fee.

With Fourth of July imminent, I had an opportunity to throw away things I’d been keeping far too long. We’ve lived in this house for ten years, and I still haven’t opened some of the boxes from moving that are stored down there. Of course, those boxes contain things I don’t currently need but hate to throw away, such as my college graduation gown, extra napkins from our wedding reception with the data of our wedding and our names embossed on them, and Ed’s childhood baseball trophies. Aside from those sentimental items, Christmas decorations, suitcases, and other assorted belongings, a number of things had no reason to remain and were headed for the large trash bags to be delivered curbside next week or boxes to be donated to Goodwill this weekend. Amid the various boxes of household items to be sorted, I ran across a large laundry-sized wicker basket I remembered that we used to keep on the bottom shelf of our built-in bookshelves in the living room at our previous house, where Alex and I had easy access to its contents. Pulling the basket out from behind the cardboard boxes stacked in the storage room, I discovered a variety of objects geared to help his sensory, fine motor, and language skills that I had gathered to help him work on some of these weaknesses. This basket of learning included the following items:

• three pieces of rubber therapy tubing, each about a foot long, that his occupational therapist gave us for Alex to chew on instead of his fingers or his shirt collars, which worked like a charm, saving his shirts—I threw away two and kept one as a reminder of a problem we overcame with a simple solution.

• a Cootie game with all the pieces (bodies, heads, legs, etc.) still there, a game we used to help his fine motor skills as he assembled the plastic bugs, which he never liked to do, preferring the game Trouble with its Pop-o-Matic dice and brightly colored pegs instead—I put Cootie in the Goodwill box.

• two View-Masters, one newer Fisher Price one I bought for Alex with cartoon reels and an older original one (probably one of the first ones made) that belonged to my dad with a set of National Parks reels, both intended to help his eyes work together by looking through the binocular lenses at the 3-D images—I kept the antique one and gave away the new one.

• a container of crayons, markers, colored pencils, and chalk that were to entice Alex to work on his fine motor drawing and writing skills but never seemed to hold much interest for him since he could type faster and more accurately—Many of these were broken because Alex had trouble holding them properly, and I threw them away.

• a travel-sized Etch-a-Sketch intended to help Alex learn to turn dials, but as I recall, he enjoyed the fun of erasing by shaking it more than creating by turning—I’m thinking I’ll keep this and see if he might try it again.

• a few squishy balls with various textures for his tactile issues that he seemed to enjoy handling—I threw these away in deference to his current choice of squishy small globes my Mom picks up for him at Michael’s craft store. Alex especially likes when I sing, “He’s Got the Whole World in His Hands” as he holds his compact version of the world in his own hands.

• a squishy heart with “YOUR [sic] SPECIAL” written on it—Even though I do think Alex is special, the error of using “your” instead of “you’re” bothers the English teacher in me, so this had to go to the garbage bag.

• two large denim beanbags my mom had made, another sensory toy—Filled with birdseed, the combination of age and basement dampness made the beanbags stink and earned them a trip to the trash.

• a set of flashcards about the U.S. Presidents, which were bent and missing a few, and one about animals, which were in pristine condition; obviously Alex preferred the Presidents to the animals—The practically new animals cards are going to Goodwill, the well-loved Presidents are going to the curb.

• a couple of wooden alphabet blocks, clearly well-used by the wear on the letters from being handled often—These will be reunited with their beloved other alphabet friends in the set I found when cleaning out Alex’s room earlier this summer.

• a plastic shoehorn advertising the bank where my father worked when I was a child and a wooden block in the shape of a shoe with holes drilled in it and laced with a shoelace to teach how to tie shoelaces—These were some of the best finds of my cleaning adventure and will be released from their basement confines to the upstairs living areas where they will be utilized since I’m getting tired of helping Alex put on and tie his shoes. Hopefully, he’ll be receptive to trying to learn this basic task once more, especially since he has some new/old tools of the trade.

Although I still have more to organize in the basement, the task is coming along nicely, and I enjoyed reminiscing as I sorted through Alex’s sensory toy basket. Once again, by looking back on our past, I feel a sense of optimism and hope about our future because I realize just how far Alex has come and know that he still has potential to overcome the obstacles autism has placed in his path.

“Don’t store up treasures here on earth, where moths eat them and rust destroys them, and where thieves break in and steal. Store your treasures in heaven, where moths and rust cannot destroy, and thieves do not break in and steal. Wherever your treasure is, there the desires of your heart will also be." Matthew 6:19-21

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.